Nov 30, 2012

When we were first married I can still remember the gasping noise I made when he put ketchup on his tacos. I have learned just to let it go. Delicious spicy food... masked in ketchup. It's a crying shame! :-) Our friends brought him this bottle because they too think he is LOCO!

Sammers really wanted to light the candles, so cute Maya helped him try to light some. Sammers has entered the world of doing things himself.

Jense wanted to have a go at lighting them as well.

I must admit there is something fun about lighting birthday candles.

It is probably just birthdays in general that I love, but I can see why the kids are all about it.

Happy birthday Daddy!

There is someone missing from this picture.

It hurts to post pictures of happy things, but feel so sad all of the time.

John really enjoyed his family/close to family party.

Some friends we've had for forever hosted a little party for John boy.

These are the "Hellewellies." I have fond memories of getting together as newlyweds.

These two are fantastic! Thanks Matt and Carrie for throwing JB a party!

This cute girl made the delicious cake- Thanks Christina!!

That is a lot of candles. He appears to be really excited about his birthday.

I think he was excited because he knew he was aboutsta play "Brown Bear." John's favorite childhood game was "Brown Bear." We have played it a few times with the kids, but it usually turns into just regular old hide and seek. An adult game of Brown Bear was exciting. It is basically sardines... in the pitch black. This was the last round and someone snapped a picture of a few of the people who had found "brown bear." There are people underneath (not showing) other people in this photo. My favorite part of the night was when the majority of us were in a closet in the basement waiting for the last two people to find us. I heard the phrase,

"I'm going to have an attack!"

I had to chuckle because these thoughts come to my brain often during the day.

I'm going to have a big crying attack. She wasn't referring to crying, but an attack nonetheless.

Thanks to friends for providing fun distractions from the un fun time in our lives.

John enjoyed his birthday and that is a big accomplishment considering how he feels daily.

Hopefully JB will get to enjoy a friendly game of Brown Bear before another decade or two passes.

Nov 29, 2012

Thinking about any holiday or celebration instills a feeling of disgust and a strong strong disdain for attending, let alone trying to put something together.

There is only one thing I want to give JB for his birthday, but that is not an option. I would give her to him if I could. I would keep her for myself first and close out the world, then I would run to him with the best best surprise of a lifetime. I miss her so much! I know I write that every single day, but it is true. I miss her more and more everyday because so many days have passed since I had her little giggling voice all throughout my day. It hurts. a lot.

John is good at cheering people up... his people. He is well known for his "attackle" if someone is bent out of shape. He keeps a lot of plates spinning and I do love him a lot. As I thought of what to get him/ do for him I remembered something he used to do often that always made me smile.

John used to interview our kids a lot... more so in the Jense/Ellie era.

To cope with my life I read back on the last four years. I get drunk in nostalgia and think about how I "had it all" for four years. I really really did. I am so glad, and am so glad that I have documented my children's lives. I can click and see her face almost every other post for the past 4 years.

In one of said posts I found this gem: *when it goes to a black screen.. it is over :-)

I love that he did this. a lot. Especially the global warming part. Oh man! She is a doll! This is Ells by the way. She is so cute, and couldn't hold still for the life of her. You will see years later... not much has changed.

So the kids and I rallied for a day and did interviews for daddy. My children crack me up. It was a good day making this. John is going to love it! I sound like a chain smoker... apologies. In thee beginning of the video Sam just wants to go downstairs to play with Jensen and his buddy, aka "party" and that is what he is trying to escape to, but it sounds like he is saying potty!

Small disclaimer: The lighting/focus was sub par... I was battling the sun going down, and was too concerned with the content/questions. So sorry. Sammy is killing me. He talked like a gremlin the entire time, until the end. The last clip is his true voice. You better believe I included questions about global warming. Just for fun.

You can tell from this vid... my kids are pretty stinkin' lucky to have a daddy like John. so so lucky! I am also a lucky gal to have a husband like John. Everyone feels like they have the best husband and I am no exception. I really do. I have received a few emails about how peoples marriages have ended due to their child going to heaven. It is so difficult to love/care for anything when you feel lower than low and sick, all of the time. I may not be handling things the way I thought I would/ am capable of, but I know I would not be able to handle anything without John. He is loving and comforting despite being tortured himself. Sometimes I wake up in the night and I can hear him crying. I just hate that everyone around me has to suffer too. It breaks my heart to see him in so much pain. He cries in his sleep... I didn't know that was possible. My heart breaks for all of us every single day. It is just the worst thing to have happen in a lifetime. So sad. The kids and I hope this is a good small respite from the grief and he can watch it over and over again to see his adoring children. He is a good good man! Happy Birthday B!!

Nov 27, 2012

I keep referring to my life of happiness and bliss as "pre Florida." I have a few blogs that I never finished from back before we went to Florida.

I am not sure if I will post them all, but I just posted THIS one, and I will for sure post the blog about Jensen's party.

When I look back on these forgotten blogs my heart feels heavy and I see her in the photos having so much fun and I can't handle my reality that she won't be in future family activities... she won't be in the tent with us again. I just can't handle that!

The camping post is only half done. The part I did write makes me feel foolish... like I need to wipe that little smirk off my face in my family picture. I feel like screaming at my "pre florida" face... wipe it off!! your life is about to be MESSED UP! Drastically altered. Quit it with your happy smiling face... Gah!

I sat and stared at the next picture that needed a "caption" if you will. I like to explain what happened/the story behind the picture, but I just can't do it. I can't finish the blog. Perhaps someday John can finish it for me, or maybe someone who was there. There is definitely some stories to be told...

Many of the pictures should have an explanation, and all the memories attached, but all I think of is pain and suffering. I just can't type anything about back when we were whole. I can't even explain the title of the blog. It was a neat camp out, and Mia had the time of her life. I wish I would have written about the entire thing. She was such a darling little Rapunzel. It is so much more enjoyable to read blogs from my "happiness and bliss" years that the constant flow of sadness that has been published as of late.

It's as if out of no where everything I write is a deep shade of gray with no trace of any vibrant colors. It is the exact opposite from a few months ago. I want so desperately to go back. Why can't I go back? People keep telling me that I'm "growing" and other such encouragement, but I by no means feel like I have any "experience" or "growth" under my belt. If anything I have regressed as a person, as a mother, and basically in all facets of my life. If this is what I have to offer... well that is just sad. Bleh!

Anyway,

Thank you for the kind messages about me being snarkity snarky. It's nice to know that many of you have faith in me! I really enjoyed some of your snarky comments about Christmas!
You know what they say... snarkiness loves company. :-)

Nov 26, 2012

Here is my dilema. I LOVE Christmas, and the feelings that are all part of the Christmas package as a whole. The songs, the smells, the lights, the bells, the excitement, the anticipation.

ALL OF IT!

Driving home the other night I heard the song, have yourself a merry little Christmas.

This is one of my fav's. As I listened to the lyrics I felt a fire of disgust burning within me.

When Frank Sinatra sings the verse:
From now on our troubles will be out of sight. I just started to scream... loudly!

My troubles will never be out of sight or miles away!!

They are in my face all day everyday!

My troubles are big enormous monkeys on my terrace.

I just feel so snarky all the time- and have ugly thoughts that have never entered my brain before.

Christmas music is making me upset!? I am not the one who gets annoyed by Christmas music. If I hear a Christmas song out of season i just feel a ting of delight thinking about when it will roll around again. Now, when I hear certain lyrics that have always instilled peace and Christmas joy, I get angry. I just can't imagine a life or a Christmas season that feels the way it used to. I will never hear Christmas music and feel the same. I am not the same. I am now a permanent resident in snarky mcsnark ville. Christmas carols, and Christmas classics are reserved for mothers who have not experienced this.

From now on our troubles will be miles away?

LIES! It's all LIES!

From now on our troubles will trail you like a dark cloud and a constant reminder right under your nose. All of you... yes all of you! JB/Me/Jense/Ells/Sam all of us have been deeply troubled. Troubled beyond measure.

I fully recognize that I write/say many a irrational thing. I know they are irrational, but that doesn't mean I don't feel this way. Like I said I am senorita snarky and irrationality is not close behind.

I want so desperately to be that mom who relishes every move her children make. If it was super cheesy, chances are I was a big fan. BIG fan.
Now my life is full of snarky malarkey.

I just want to see all of their faces on Christmas morning so filled with that thing that makes us HUMAN. It is a basic human need right? The joy of being together and feeling so much love? The excitement and overwhelming gratitude?

I want to feel that, and know I will to an extent, but not the way intended.

I want to see her face, I want to get her hugs after she opens a gift.

It's just too much for my mama brain to think about her not being there.

I really don't want to be the grinch of Christmas, but when I think about Christmas I want to have Christmas the proper way. I don't want to feel pain, I don't want to feel loss, I dont want to feel like I'm missing out.

I can't even enjoy the lovely happy Christmas music that was once such a source of Joy for me.

It's not just the music... so many things are triggers. Santa, candy canes, toys, candy, christmas lights. I can't escape the pain, it's everywhere and it hurts! a lot!

I don't know why I am being tormented, but it seems like everywhere I look there is some darling mini mouse themed toy, or outfit. New minnie mouse items are EVERYWHERE! She would have been tickled pink by any of them. She loved to open gifts and her little face always lit up regardless of what was enclosed.

I just really truly do not want to have a Christmas morning without her.

Tonight John and I went out and purchased a few things for the children's stockings and as I picked out a few things he informed me that we will always fill a stocking for Mia. I am so glad he feels this way. I want to too, but didn't want to have a conversation about it because I didn't want to lose it in the store. I quickly selected four of each thing and placed them in the cart.

Mia loved Christmas. She loved the lights and loved driving past homes that were all aglow with lights and lawn decorations. She called them, "Cwistmas house!"

Ellie asked me today if we could buy gifts for Mia and keep them in a special spot.

I of course told her that would be fine. Maybe it will help... maybe it will hurt more. I don't know. She wants to do it, so we'll go with that.
Ellie is so sweet and is always thinking about her sister.
She said she would be too sad if there weren't any gifts for Mia under the tree.
I agree wholeheartedly, but the thought of her not being there to open them makes me want to throw myself on the floor and scream.... not getting up for hours. Sadly, this has happened... it's not a comfortable or happy place to be.

A few months back I remember seeing this and thinking, this is the perfect Christmas gift for her. Seeing it again made me replay those feelings in my head over and over.
I was so not prepared for this.

I wish I would have bought it on the spot and given it to her.
I wish I could rewind to that day. and have her.

My goal for next year is to have rid myself of all snarkiness or at least some of it, and allow myself to enjoy the season. My snarky thoughts/comments are not toward any persons... just this lousy situation... just to clarify.

Nov 25, 2012

"Mom, I have a strong feeling that we should go outside and look at the stars."

I said, "Ok, grab some blankets, and put your coat on."

Then I could hear him inviting Ellie to come... then his dad.

While I was gearing up to go I was hoping that the kids would see a shooting star and that they would feel like it was a Mia in heaven sending it to let them know she was aware of them.

This is exactly what happened.

Within three minutes of being outside the Mia star shot across the sky.

The kids reaction was priceless, and the conversations that followed were charming and sweet.

What happened next is very special to them... to me.

My children miss her so much, and they needed this.

I am so grateful it happened for them.

Jense and I had a long talk about listening to those promptings.

He feels pretty excited about his little message from Mia.

I am too.

She has always been a shining star in our lives. As I sit and type this I remember my sister recorded a little video of her. Here she is right after her birthday party. It was a hot day so she came home while the rest of us cleaned up. I am so glad to have these little reminders of what a precious child she is. I love the sniffle and the "oh beh bay" and let's not forget her using an fsound when pronouncing "my." She is my shining star!

Nov 24, 2012

A few days after the funeral I was presented with this beautiful painting of my baby girl. It is so beautiful. A friend of mine Eric Thompson painted this incredible work of art. Eric and Hillary, are the parents of a beautiful heart baby. I have mentioned their daughter before on this blog. When I first saw it I burst into tears. He is a truly an inspired artist. He doesn't usually paint portraits, but mastered this portrait of Mia. I am amazed at his talent, and I think when he created this, he must have known what my heart needed. I look at this often throughout my day and just sob. I want to pull her right out of the painting and put her in my arms. In life, some things just connect to your soul, this is one of those things. This beautiful piece of artwork is on my wall, and is something I will be looking at daily for the rest of my life. Thank you so much Eric for giving this to my family. I am so grateful for this gift... so so grateful!

Nov 22, 2012

My mom brought this down to my house today. She found it when she was cleaning up. It is a shapes that Mia colored and her teacher "Miss Patty" put a Happy Thanksgiving sticker on it. My mom thinks her finding this is Mia's way of telling us something. I'd like to think so too...it's her way of telling us to have a Happy Thanksgiving. I wish I could just hold her face and hear her say the words. I miss her so!

Here the video from her transplant anniversary. I am lucky to have friends who are willing to help me finish projects I start, but don't want to finish. I feel so blessed today to have so many people who love our family. It has been a beautiful day so far, and I am very thankful this day. I am very very touched. Post coming about the Turkey Trot.

Nov 21, 2012

My kids love Starfall. They love the songs. They have dance parties to the songs.

Mia's sweet little voice could sing all of the songs. She would listen to them over and over again in a loop. She especially loved Georgie Porgie, and There was a crooked man. I remember hearing her say "stich it up and stich it down" and laughing because I had no idea where she picked that up from. Then I remembered it was from mend my shoe on Starfall.

Hearing the songs play over and over again make me miss her even more if that is possible.

She loved starfall, and I loved listening to her sing all of the songs. She was a smart little thing, and learned lyrics quickly.

One of the last songs I remember hearing her sing is a Taylor Swift song. She would sing.. "WE eee never ever ever back agether." She must have only heard that song a few times, but had the chorus down.

Now there is a new tradition. Ellie and Sammy watch startfall together and watch/read all of the stories. Two things I am loving about this moment. 1) Sammy is using is halloween pumpkin full of candy for a foot rest 2) Ells uses her middle finger to navigate the touch pad (like me).

Not having her here to sing all of the nursery rhymes makes me crazy.

She should be right on the other side of Ells.

There is something missing from this photo!

She will always be missing.

My little peanut is not here and the kids sing the songs with each other but it is not the same with out that sweet little voice singing along. It just isn't right.
Every day is a series of stomach punches weeping.
I just miss her and I'm sick and tired of not having her.
I need her face and body right here, right NOW!

Trying not to lose control...

On a lighter note,

~ If you are coming to the Turkey Trot tomorrow please stop and say hello.
If you don't know what I'm talking about... click HERE

Nov 20, 2012

*I wrote parts of this blog a few weeks ago, so it skips around a bit.

Everyone feels helpless

No one knows what to say

There is nothing to say

It's a pain that you can't escape by any spoken words

I have always been close with my mom

I see the pain in her eyes and I feel so sad and angry that my mom has to hurt this much.

A few weeks ago she mentioned how it was such a joy to care for Mia.

She said that she loved getting her out of the tub and getting her jammies on.
If you are new here we lived with my parents for a year.
Nana was a huge part of Mia's life.

Immediately my mind shot straight to lifting her little body and how I loved wrapping her up in the towel. She always requested to be held, "like a baby." I always rocked her in the bathroom like a baby and she looked up at me with a pleased look on her face. She loved being held "like a baby" and it was a routine after many a tub. Then before getting her jammies on we did something called "dryer machine." I used the towel and dried her off in quick short movements while singing a goofy dryer machine song. She would squeal in delight and say, "more dryer acheen."

My arms literally ache to hold her "like a baby." and tickle torture her with "dryer acheen."

I think about my mom and how she has always been available to me. From staying up all night to help me with a report in high school on down to taking our last family picture a few days before we left for Florida. She is extremely helpful and has supported me my entire life.

Now here we are smack in the middle of a horrific nightmare and no one knows what to do. I sit around the house mostly next to Sam while he plays, then lay down, then get up and feed Sam, then cry and the cycle repeats over and over. Living after having a child go to Heaven is not really living as much as it is taking up space and taking in oxygen. Besides typing up my feelings I don't accomplish anything, nor do I have any grandiose plans to accomplish anything. I am just here. Trying to figure out what in the world just happened to me, and why.

I find myself listening to sad songs... every sad song I can think of. It is almost a quest to see if there is a song out there sad enough for how I feel in my heart. I have not found one yet. One song that has always been on the sad list, is a song by Rascal Flatts. I have always been a country music girl. I love all types of music but some country songs really speak to me. Me and my sister Nat have always been the "country girls" in our family. John also likes country almost as much as his old school boyz 2 men jams. The song What hurts the most by Rascal Flats is one of the songs I have been listening to. I was watching the music video and the actress in the beginning is so convincing. If you watch it, this is a good description of how I feel throughout my day. I am angry and devastated to the point of flailing and screaming out loud. I don't really have anyone to hit or scream at, or to accuse of hating my daughter, but the outrage and indignation is exactly what I feel. Later in the video you see the mom sitting next to the bathroom, and I think of my mom when I see that. Just sitting there... helpless, but there nonetheless.

She has always had the answers, the fix-it's. She is one of those overly capable people that I have relied on for years.

She is just sitting there, and yet that is all she can do.

I am still on a quest for the saddest song. I'm currently swimming in sadness and music is good company for now. Other sad songs they sing: Here, Here, Here, They have some good sad/inspirational songs for bereaved mamas. I think I need to send them some lyrics about how my baby girl went to Heaven on her Make a Wish trip. Now that! Is SAD!

I recognize it is uncomfortable for some of you to read the things I have to say. That is OK. I just need to go through the thick of it. I'm not going to pretend this is not how I feel. I am functioning more than I was a few weeks ago, but I am no where close to being alright. It's going to take what feels like forever, but I need you to trust me. I feel dreadful on a daily basis, but I also laugh. Sam keeps me on my toes, but my bed is always calling to me. This is just the way it is. My family is pulling together, but we are not "performing" as we did in September A friend emailed me something I thought I would share. This is what she wanted to email someone who would like to hurry up my grieving. I like what she had to say...

Mimi has the remedies. Trust her. She is helping herself every day by mourning properly the loss of her baby girl. Mourning Mia is ugly and painful and unimaginable...and right now she is weak and sad and broken, but she is (and she will hate this) also strong and full of faith and eternal knowledge...more than I could ever offer her in a quote or in 3 hours of church.

I do have the remedies, but am not looking for a remedy because the only thing I want is not an option. Mia is on my mind all the time, and I just want her. I'm always going to want her, but right now especially I am doing the impossible. It's not easy and It's not fun.

Little flecks of life somehow trickle in and I do derive comfort from these flecks. It's difficult to sit and pout in my bed when day after day I am showered with love. I thought for sure we would be old news by now, but the incoming love is a steady and constant stream.

Once again, I am extremely touched by the outpouring of love. Truly. There are some incredibly sweet and caring people who read my blog. It gives me hope to know so many of you care. Thank you!

Among the amazing people are some lovely friends doing THIS. I will be there with my family. I might hijack Jensen's scooter, but I will be there. Thanks to everyone who is putting this together. I am so so touched! You can also click HERE for more information. I am told that you can drop off baked goods tomorrow at the Midway Town Hall. There is also going to be a silent auction as well. I suppose I should have blogged about this earlier, but if you have nothing going on early on Thanksgiving day, come on up. If I don't see you, Happy Thanksgiving!

Nov 19, 2012

I admit that despite wanting to be in my bed all day, everyone who is praying for us must be specifically praying for Sam. I admit he makes makes my heart sing. I am enamored with the little man and always have been, but there is something about being in the depths of despair and having a little chit chatty two year old to pull you up and out of the swamps.

This picture of Mia and Sam says it all. Best Buds. I love her arm around him, I love the look on her face. I remember once Sam ran to her to give her a big kiss and he took her down. They both fell the ground and cried and then Mia replayed the entire scene for me. She liked to reenact what happened. She also relayed a lot of stories in the third person. "Mia fell down like this." Once she told me about how Sam was trying to kiss her, she did muster a smile. She was so good to Sam. He liked to pester her from time to time, but for the most part these two were peas in a pod. Everyone got along really well with Mia. She rarely had disputes because she was impeccably pleasant all the time. The only time she was slightly demanding was when she wanted a bottle and there were no bottles to be had.

Not having Mia here, is feeling like I am out of state on a trip and when I get home I will scoop her up. However, somewhere in my brain I know that this "vacation" is going to take a lot longer than all of the vacations leading up to this point in my life. There is nothing more gratifying in life than coming home after being away from your kids and scooping them up in your arms the second you walk in the door. The anticipation is almost too much, and when you finally see their little faces something within gets closure and all is well with the world again. Every day of my life I feel that anticipation I need her! I need to see her face! I want to walk in the door and have her run to me and scream "Mommy!!" like she always did. I need to hear her say, "I missed you today." The awful, excruciating truth is that the anticipation is here to stay and it feels like I will have to live a lifetime before I get to scoop her up. I have yet to have a feeling of resolve. Every moment I think about Mia, which is a often, there is a lot of uneasiness and panic. My brain cannot handle her not in my life, yet day after day it performs to the best of it's ability.

When I hop on the computer, usually at night, I typically let loose with my fear/anger/sadness and that is the majority of what you will find. Tonight however, I want to blog about a few things I want to remember about my boy. Sam is just as cute as ever and is warming up this heart of mine. I mentioned two major Samisms in yesterdays post... but here are some that I never want to forget.

"I loves these growsweees!" Sam's code word for any grouping of things is "growswees" (groceries). He uses the word freely and I 100% play along and take cues from him on what are and what are not "growswees." Tonight he sat next to me in the bed with two of his trains and 2 chevron cars. He had them all in his tiny little hands, then held them up to announce: "I LOVE THESE GROWSWEES!" I'm pretty sure he has confused the word item, or stuff with groceries. I love that he loves his groceries. He loves loading up his Thomas ride on with all of his precious groceries.

Sam needs a buddy. I did not know how badly he needed a buddy until his buddy was not here. From the moment he wakes up until he goes down for a nap and then to sleep for the night he wants a companion. My favorite daily requests are: "I wanna play trains wis you!" "I wanna play trains wis you!" This is probably the phrase I hear more than any other throughout my day. We play a lot of trains, and when we are doing so we watch other people play trains on youtube. He loves watching the videos of thomas crashing, or being derailed. He is 100% boy... this kid. He is also really loving videos of the ride- on trains. He watched a boy ride around on a Thomas Ride-on for probably 20 minutes. That video increased in views by at least 10 solely from my son watching it over and over. Another phrase he says frequently is: "I want to hold you" and "I want to carry you." Both of these phrases he picked up from Mia. He also wants to dictate where you sit while playing said games. "No mom, sit right theya." JB likes to make fun of his brooklyn accent. Sam puts an a on the end of a few words, and we can't get enough of it.

He loves to give kisses and if you have stopped by lately, chances are you have been the victim of Sam's kisses. The best thing about Sam's kisses is he insists on giving you a kiss square on your lips. He likes to make a big smacking noise in addition to the big long kiss. John and I get a kick out of watching people try to dodge him and present him with their cheek only to be pulled back to face their destiny. It is adorable. He is one affectionate little man and I will never get tired of his kisses.

Sam loves to be crazy. He loves to scream really loud just for fun. He is always game for a shouting match. Whoever can hold the yell out the longest and loudest wins. He can hold his own, but he always ends his scream with a belly laugh and goes right back to it. This kid has got some high functioning lungs, this we know.

Last night I was cutting my mother's hair and Sam walked in and said, "NANA, you looking good Nana!" Completely unprompted. I honestly have no idea where he would have picked up that social que at all! He is 2! He complimented my mom on her hair? So funny! His voice and intonation was so sincere. I cannot get enough of this boy. He promptly climbed up in her lap and sat there during her hair cut. I have always enjoyed cutting my moms hair. My dad finally caved this last year and let me be his regular barber as well.

My very favorite Samism is what he calls his blankets. He has an intense addiction to his "Blane-Deees." I always wanted a baby Linus and I got one in him. He has them with him all the time, and needs his Blane-Dee's to sleep. One of his Blane-Dee's is pink, it's one of Mia's blankets that she willingly gave to Sammers. He has two blue and one pink. They are very similar with a cosy fleece on one side and satin on the other. At night he is very specific on how you place them over him. The boy knows what he likes, and he really likes his "Blane-Dees."

Nov 18, 2012

The kids brought these little solar powered flowers to put next to... on her site. I have a really difficult time describing this place and having it associate whatsoever with my little girl.

I'm just not there yet. I know it is my reality, but I am clinging to denial for now.

They brought little flowers... let's just leave it at that!

These little flowers when charged, move their leaves up and down. I wanted to buy a bunch of them, and I called every dollar store in a 40 mile radius and they were all out. I'll keep checking, and come spring we will have some fun things up there. Anything cheerful and solar paneled will do. These flowers are perfect!

Sammers and his Nats. I've said it once and I'll say it again. Sammers is a ladies man... mostly a sisters man. He loves my sisters. a lot. He is really good for your self esteem... especially if you are related to me.

Ells and sammers were running around and Nat caught a little moment with Jense. He was asking me when we are going to get a headstone. See that gravestone to our left? They are brother and sister... both babies. Frank and Annie. If you spend enough time at the cemetery you start to learn names and lengths of time on the earth. We removed the rest of the flowers today. We have slowly been removing the flowers, and today decided to remove the rest. My parents placed some sod, and have been frequenting the cemetery as well.

While we were there we walked around and looked at headstones. I visited two of my classmates sites, and saw a headstone that was heart shaped. Ironically in big letters on one side of the heart it read, McDonald. I like the heart shaped headstone. After the funeral I received a few advertisements for headstones. When I opened them I promptly tore them up while screaming and threw them in the garbage. So... due to my fit of rage I don't have any examples of headstones. NOR do I want to go browsing yet. There are certain things that shouldn't exist in young mothers' lives... headstones are at the tippy top of that list.

Nor should little two year olds frequent cemeteries. They should go to the park. Sammers was running so quickly that both of his feet were off the ground. His arms are so entertaining to watch when he is running. They flail in all different directions and they appear to be disconnected from any control of his muscles. I love it.

We received so many neat things from so many people. So so many. I am very touched. Among all of the lovely things were these necklaces. This one is Jensens. It is so sweet. Thank you Michelle for for all of the jewelry and kind words. I remember when Gracie went to Heaven I wept for you as her mother. I truly appreciate everything you said. Thank you.

Sammers having a little chat with his "Meena."

Then of course a kiss for his sis.

I wonder how much he truly understands.

Every time I ask Sammy where is Meana is he insists that she "went to the camping."

He also has said multiple times that she is "at the hopsital."

Ellie has a collection of necklaces that she has been given the last few weeks.

She loves them all and does not take them off

This necklace has Mia's fingerprint. so precious. More on this later.

I went to church today. Today was the primary program and I didn't want to miss out on the kids singing. It was not an easy day. When Mia's class lined up to speak their part into the microphone I couldn't help but think about how much Mia would have loved that. I imagined her walking up there and then saying her part, then looking at us with her darling little face. I could tell my mother was crying one row behind me. We are missing out, and missing her so much. All of us. It hurts to be places knowing full well that she would naturally be there also, but she is not. There is an immense void, and it hits hard at certain moments and at times is more subtle. This is one of the wall crashing down experiences. It hurts! So badly! She would have been so sweet to watch.

She only sang up on the stand once. It was her one and only primary song performance. She loved it. She marched up there with her sister and looked at us the whole time smiling and waving. I wish I had a picture of her... I would have taken one too. Taking pictures in sacrament meeting isn't really something you do, but if I could go back and take a picture I would do it. Sammers actually decided to go on up to the front as well last year, even though he was much too young. When Jensen and Ellie and all of the children got up to go to the front and sing, Sammers decided to go up too. We of course didn't stop him. He wasn't about to let all of his siblings go somewhere, and leave him behind. He did sing, and he did wave, and when he came off the stand he proclaimed, "I sang a song!" really loudly. He was so darling up there with his sisters and brother. I remember having a very overwhelming feeling of Joy watching all four of them. I was so happy, it was like a little slice of Heaven during sacrament meeting. Today something happened and Jense, and he decided to come sit with us and couldn't participate. He is having a rough time, so we didn't talk him into going back up. He was really excited to play the bells for a song, but he got too nervous. Poor kid. After church he informed me that he was looking at his necklace and got really sad about his sister. I told him that he needs to give her a kiss every time her misses her, now that he has a picture of her on a necklace.

I survived the day. somehow. Not seeing Mia up there with the rest of the children in her class had the potential to destroy me, but I survived. I think maybe worrying about Jense and his feelings distracted me from the pain of Mia not being up there as she should be. Ellie did a great job! She kept looking at me when I was crying, and I could tell that she was a little worried, but kept singing. At the end of the program the bishop talked about how wonderfully the children sang, and mentioned that he believes that there were Heavenly angels singing along with the children as well. We have a great bishop. Truly.

Nov 17, 2012

When Ellie was a baby we used to think something was wrong with her pain receptors. I remember one specific incident where Jensen toddler walked over to her and smacked in the face with a toy. She just kicked her legs, smiled, and moved her head back and forth like she was a little surprised She did not even grimace. No crying... just smiling. We always joked that she doesn't feel pain. Physical pain that is.

Last night we were sitting in the kitchen together. She was telling me about a friend who had a bunch of cool American Girl dolls and then something about that friend who had another friend who had a whole closet converted into an American Girl house or something. Ellie likes to look at the catalog but I have never ordered anything from it. Our version of America Girl dolls are the 18 inch dolls from JoAnn's fabric store. Sometime this last year some one informed her that the American girl dolls hair is softer... so she is on that kick lately.

She pulled a catalog of American Girl dolls out of the junk drawer and set it on the table. She sat there and stared at it. I walked over to the fridge to fill up my glass with water. When I turned around she lunged into me crying. She wrapped her arms around me and just sobbed. Then she made out the words... "It is too hard to be here without Mia."

My heart immediately began to crumble and I had a long heart to heart with Ellie. She kept telling me how she just wants to talk with her and play with her. She is in so much pain and I am helpless. I just want to give Mia back to her. To have something so precious taken from her is eating me alive.

After we talked and cried together for awhile I walked back to the table. Then I saw it. The cover of the catalog pictured two little girls... possibly sisters. They each had their dolls and were laughing while looking at each other. Seeing the models having fun with their dolls is what triggered Ellie's immediate dash into the kitchen followed by endless tears.

She is so sad. I am so sad. She told me that she wants to play with her and that she needs her sister back. I feel like I show up empty handed day after day with nothing to offer her. I can't fix this and I just keep telling her to pray. I don't know what else to do. When we were all done talking she informed me, "mom, it's ok for you to cry when you want to." I really appreciate her saying that because I feel like when I burst into tears throughout the day I am usually in a different room or have my back turned. I have almost mastered the art of silent sobbing when my kids are around.

Yesterday Sammers must have known I was crying because he ran to me and in his loud Sammers voice said: "What's da matter mom?! You have a owie?" I said, "Yeah, I do." My face was buried in my hands so he assumed the owie was on my cheeck. He said, "I kiss it bettow." He then gave me a big kiss on the cheek and said, "All bettow mom... you all bettow now?" I told him I was. Sammers is my little dose of medicine throughout the day. He is a little talker and just says the funniest things all day long. Last night while I was making dinner he kept saying, "I wanna be you chef!" He likes to sit and help me cook and calls it "YOU CHEF!" While we are cooking I told him, "Sammers you are too much." He has been telling me, "Mom, you too much mom!" All day today. It makes me smile every single time. My little boy is such a charmer and at the age of two somehow knows exactly what to say to brighten my day.

Back to my point....

Today I am wondering if I was born, or somehow developed, or suffer from a heightened awareness of grief. An Extra dose of mourning or sadness... to offset the physical pain. My head, my heart, my existence feels so hurt...It hurts so much it just feels impossible to continue on with the rigamarole of life. I don't want to do homework, and flashcards, and cook, and clean, and put away laundry. Everything that was just a part of life before, has no purpose or Joy. I am being held together solely by the love I have for my family and the hope that someday somehow I will be in a better place. For every moment I am OK throughout out the day, there is an opposing emotion of anger, sadness, and a intense feeling of defeat. Both Ellie and I are pretty "tough" and don't feel a lot of physical pain, and I can't help but wonder if we both got an extra scoop of the pain associated with sadness.

We sat in bed together for a half an hour looking at the catalog. She pointed out every single thing on every single page. There are an awful lot of accouterments associated with American girl dolls, that is for sure. I enjoyed listening to her and tried to get excited when she did as she gave me a tour through the catalog.

She has decided she wants a bunk bed (like Mia's) for Christmas. I might be buying a doll bunk bed for the girl who is clinging to everything she can that reminds her of her sister.

Today I just want her. Every minute of every day... I just want her. I want her for John, for Jense, for Ells, for Sammers, and for me. Sometimes I can almost hear her playing downstairs in the toy room with the kids. All of the sounds are the same, and sometimes it feels like she is here. Oh if I could just see her face...

Nov 16, 2012

I saw the drill team today. The cutest high school girls known to man. They made me smile when I walked in the door. The are happy... the way they should be. Beautiful on the inside and out. I feel like I don't belong with all of the ugliness I feel in my heart. I don't know how to interact with them. A few weeks ago you could throw me in any age combo of teenage girls and I would be right at home. Now I just feel lost and out of place... like I've had a dump truck full of a heavy substance permanently adhered to my body and my personality. I smile and try not to alarm them with my sudden change in disposition. My heart longs to be the Mimi they know... she is just not there... or is buried so deep that it will take a lifetime for her to surface. Sam was watching the Incredibles the other day. In that movie there is a part when Mr. incredible is sneaking to the main server housing information on all the "supers." Suddenly his homing device is activated and he begins to run. He is immediately taken down with large black inflatable weighted balls... if you've seen the movie you will know the scene I am talking about. I live with those large sticky black gobs that render me incapable of moving forward at all. I am stuck firmly to the ground and cannot progress. Before Florida I was truly happy, and could easily laugh about every and anything with these girls. Now, exists a small patch of common ground. It is there, but I am stuck in between these massive objects keeping me down and I can't access it. I am old, I feel like a granny on the inside, light years away from when I felt that young and carefree. They are young, and I feel like I age them every minute I'm in their presence. It was so fun for me... for Ells, and for Mia to be around these girls. Mia loved them, and they showered her with love and attention. She loved the "wattspettes" and I loved watching her around them. It's difficult to go back to things that made me so happy that involved my girlie.

I sat and watched them interacting, their eyes so eager and innocent. So happy and full of life. I couldn't help but wonder if any of these girls would have their hearts torn from their chest the way mine has been. What an awful thing to wonder!? Yes, they will all have their own trials, but this is by far the worst trial I have experienced. I don't want any of them to feel the way I do. It must not happen to any of them. It will ruin them... and they are too fragile. I am too fragile!
They are beautiful and inspiring and have their whole lives ahead of them.
Mostly innocent to the pain you subject yourself to when you decide to be a mother.
I never thought of mother hood as a risk before... now I do.
It is a risk you take... never thinking for one second about how you would manage without one of your kids. No body thinks like that! Not even mothers' who's precious baby was gifted her life by another baby. Not even that mommy. I never imagined my life without Mia. I was grateful for every single day, but I had so much faith that she would outlive me. As it should be. It's hard when something I believed so strongly blew up in my face in the matter of a few days. Now I am left trying to pull the shrapnel from myself. Not to mention all of the injuries to my other little people that desperately need her. I am scrambling to pick up pieces of broken hearts, and I can barely breathe most of the day. That is why walking into a room full of girls when I look like myself, but I am suffering so much on the inside is so difficult. I want to be the person they know. I want to help them! I want them to do great in all of their dances... I do. I just have to try and create a small air hole from the massive black tarish looking glue that holds me stagnant.

Growing up my dance instructor lost her son. I still remember being at a recital and crying when they dedicated a performance to him. The song was wind beneath my wings. That has stayed with me. How in the world did I remember that? She was always so classy, and as I danced for her on the drill team in high school, I thought about her life without her son from time to time. She was so good at what she did. I was young, but I don't recall her not functioning or giving up on her life. She stayed the course. She showed up, she was there for us. How did she do it? She told me recently that she the sadness never goes away. It will be with me my entire life. I look at her life and all she has done and am amazed. I am sure glad she did get out of bed to coach us, and I hope to channel some of her courage and continue to do drill team. I love these girls... so so much. It's so difficult to feel much of anything right now besides, well the previous 30 posts on this blog.

I can't believe that I am the one... not that she looked out at all of us wondering if one of us would be going through the same hell she did, but it is me. I am the one.

Nov 15, 2012

Last night I had a meeting. I took a shower, put on some clothes, sprayed myself with happy oils, and headed to an IHH meeting. While we were in Florida I was elected the president of IHH (intermountain healing hearts). More on this later. I went to the first meeting in hopes that I will be able to carryout my position for the next two years. Despite having the the desire to do absolutely nothing- I don't want to regret giving up on things that were important to me pre-Florida. So I went to the meeting. It went fine. Heart moms are by all standards- amazing. I tried to put on a happy face and gave my self a big pep talk on the way there about not crying. If anyone one understands heart ache it is heart moms, and I know they would understand had I slipped into a few crying fits here and there, but I didn't. I made it through the meeting with no tears. no tears. We took some pictures for the upcoming year and we even wore capes... new IHH board super girls!? I'm not feeling super at all, but I happily put on the cape and put a smile on my face. I held it together... and caught myself slipping into a Mia coma a few times, but stopped myself- then refocused. I am glad I went. I still don't know how much I am capable of, but knew I could at least attend the meeting. I am hoping I will feel like I have something to offer them when it is time to support fellow heart families.

After the meeting we were in the parking lot for awhile. Once everyone had parted ways a few of us remained, and it was so cold we decided to sit on one of the heart moms vans.

As we sat there visiting my thoughts flashed to Mia's last hours in that hospital. Specifically to when they were trying to get an IV in her to start a bunch of medication she didn't need. They blew her vein on her left arm and when they went to try on her right arm Mia started to cry, so hard. It was a new cry. She usually cried for blood draws, but recovered quickly and even said thank you to the one drawing her blood. This time, she was screaming and hurt, and not OK with them trying to access her veins. I was holding her in my arms as she was screaming and screaming. I just kept praying over and over and over that they could get the IV that very moment. Right then! So we could be done! She kept yelling "Help!" When she started screaming for help, and I could not help her I began to sob.... audibly. I could not believe we were stuck in this little room with the IV team trying to get access, when she was supposed to be at Disney land. When I think about the 20 minutes we spent in that room my heart turns to stone. It's not fair. I can't agree with that being one of the last time I held my baby girl. Those agonizing last moments I had with my daughter were full of so much pain. I held her and cried and when it was over we went back to her room and I just held her and cried some more. I kept thinking over and over in my head... well, if we are here for a few days that will be ok because we had 10 days in Florida and she would still get to go to Disney. Those were my thoughts... getting her out of there. I had no idea that those were my final moments with my girl. No idea. I held her in my arms as they tried to give her an IV and had I known what was going to transpire I would have just held her in my arms and sang her songs. Instead I just cried and held her and cried some more. I always hated IVs, but for some reason this one was different. She was so upset and I can hear her little voice scream for help as clear as a bell. It haunts me throughout my day. I thought what I was doing was helping her, but it wasn't.

After seeing that room in my head, and hearing her little voice yell, "MOM! HELP!" I couldn't hold it together anymore. I didn't make it. I know it is ok to cry, I know. It's like the sting enters my heart and there is no turning back. This memory of her makes me cry every day. I want to go back and save her from that experience. It is so awful and horrible and ugly. How am I supposed to be the leader of this organization if I can't make it through the night without a breakdown? The memory of her last moments with me haunts me like the plaque. She needed me to help her... and I just sat there and cried. I was desperate for them to find a vein, and I was just counting down until it was over like I always do. I count down in increments of 10 until it is over. It took forever. When I would get to 1, I would pause then start back up hoping it was the last 10 second countdown. It hurts so bad to think about it. Physical pain... not just emotionally hurting... it hurts by every definition of the word.

Doing this... all of this... is too much for me.

My heart has been annihilated and I don't know how to do this. I don't have the answers. I don't know how to try and tell my brain I am for a moment or might someday be OK. I am always going to remember her voice calling for help and having that as our parting experience. I love that girl and just need her. I need to help her. I need to take her home from the hospital and provide her with so much love and snuggles. I'm just a little mommy and do not have the capacity for this. I'm not built for it. I could handle everything thrown at me, but not this. I just need to help her and help her be happy, but every morning I wake up to despair! The weight of the world keeps crushing me down further and further. My mortal brain tortures the fact that I can't help her. I can't make it better for her. I can't take her to Disney. I can't I can't I can't!!!

This experience keeps me awake at night, wakes me up right after I've fallen to sleep, and huts like Hell every time it enters my brain. I am hoping by sharing this, that It won't be such an internal war myself, and my ability to function. I had no intention of sharing it, because it is too awful and if I described the way I really feel I would probably have to stop blogging. This is the sugar coated version of what turned out to be the worst 20 minutes of my life. Had she lived, it would probably be a distant memory by now, but because everything happened the way it did... I live with this 20 minute monster on a daily basis.

I went to the meeting, and hope I will have something to offer IHH these next couple years, but as long as Mia's last day sneaks into my thoughts the governing board will just have to get used to me crying.

Our next meeting is in January and I want to be a good leader but feel so defeated. I need a shred of understanding. I do not understand, and it is eating me alive. I just don't get it! I am hoping that the families will not be disappointed if come January I am still lost. Luckily I have some amazing women on the board who are supportive and are already loading up their cars with things meant for my car. literally. My plan is to not throw in the towel... I want to turn my grief into something good. This is the perfect opportunity, but I am so far away from feeling like I am in a good place.

When I got home I walked into my room turned on the bathroom light and caught a glimpse of a little blond haired girl in my bed. It was Ellie of course, but for a split second it felt like Mia. Ells never sleeps with us and Mia always started out in her bed but by Midnight she was in our bed. Seeing Ellie's blond hair through the disheveled sheet was an out of body experience. I proceeded to the bathroom and once again cried. a lot. Nothing feels right. My life is foreign to me. It's full of pep talks, trying to avoid thinking of experiences, and not thinking about my future without her. I am usually unsuccessful, but for one evening I almost made it. Almost.

Nov 14, 2012

In an alternate universe we would be here. At this lovely event, with lovely people, doing and saying lovely things.

Today is the day that Mia was supposed to meet Jessica. She was going to give her hugs and kisses and give her a silver necklace with the words 'angel mother' engraved on it. The necklace also had a little heart with a J for our Jacob. She was going to give it to her, and in her tiny sweet voice she was going to say "Thank you."

Instead she is Heaven. The necklace was mailed instead of hand delivered and there is a Ballroom full of people who will not be smitten by my daughter. Nope, not today. or ever.

I don't want to wake up everyday feeling disappointed, but today I feel especially disappointed. We were so close to going- and so close to getting to give Jessica that thank you she deserves! SO CLOSE!

Just so I don't feel like a complete failure on this day that was supposed to so wonderful I will mention that Organ Donation is truly the most life changing decision anyone can make.

Having Mia in our family changed our lives more than I think I can comprehend right now.
She changed us all! It will always be a passion of mine because we got to keep our Babina.

We are so grateful to have had her for the 4 years we did. It will forever be the best four years of our lives. She provided us with more happiness in her four years than I thought possible. I will be grateful to our angel mother Jessica for the rest of my life. I will always love her and know the gravity of what she did for us. We are woven together by this darling little child who changed so many in her short little 4 years.

I am honored to be her mother, and despite being incredibly sad everyday, I feel so incredibly lucky that I am her mom. She came to me, and that is something I will always claim as truly remarkable.

Mia, we miss you so much girlie. so so much.

Our hearts agonize everyday to have you here with us. I wish wish wish we could be together in Oregon today and that you could finally get a chance to meet the mommy to Jacob. I will try to always make sure she knows of all of our love. I love you nina. You are my girl.

Nov 13, 2012

Today we were supposed to get on a plane to Oregon. Mia, John, and myself. I would love to be on that plane with my man and my little girlie.

I got this reminder email yesterday:

Dear, Mimi, John, and Mia McDonald... It's time for your flight. Time to throw salt in the wound is more like it.

You can probably guess how it feels to get this reminder email about the flights. I can't help but think about how my life could be so drastically different if I still had my girl. We would be flying to Oregon... happily... probably watching Bo on the Go on the ipad. I had my speech all prepared to deliver at the lifesavers breakfast. Mia was part of the speech. She was going to tell a story... her version of the three little pigs. We had such a beautiful message to share together, and now I am left to share the message without her. Reading the speech I wrote makes me ill. It talks a lot about all of these things I am so grateful she can do. Also, despite living with a transplanted heart she lives a full live and does everything other 4 year olds her age can do. A true blue modern day miracle. One example that is in the speech is about how I do not take anything for granted. I used the example of how keenly aware I was of her first "drop off" play date. A few months back I dropped her off at a friends house and she walked up to the door all my herself and knocked at the door. She looked back at me with her shoulders slightly hunched over and the happiest little grin on her face. Once they opened the door she waved wildly back at me, and went inside the house. That was the only time I ever "dropped" her off and let her walk to the door while I watched from the car. She was so proud, and so happy to be going to Aida's house all by herself. I can see the look on her face so clearly and I feel crippling sadness that I won't see that little face smiling back at me on her porch again. I sat there in the car knowing full well how special that moment was. I watched her happiness and felt such immense joy to see her so happy. Reading the speech now makes me feel stupid. I was so happy... and full of so many lovely things to say. How does it just go!? Just like that!? NO WARNING!? I love her so much and I truly, honestly am on the verge of insanity every single day. I miss her and need her little body... her little voice to talk to me.

I just want to be in Oregon with my people. We were meeting up with friends who were going to come support us and stay in Oregon with us. I was so looking forward to this. So much. Rebecca and Jen, we were going to have so much fun together. One little girl and six of her adoring fans hanging out together. I thought about it often...I have been planning these two days in Oregon for almost a year. Now I am here sitting in my bed while Sammers is sleeping, typing this up. This was going to be my first public speech with Mia by my side. Why? It feels like such a wonderful thing to do? I have been preparing for so long! I don't get it. YANKED! I feel like my life has been yanked away and I am looking around astonished at what has happened and can't make sense of any of it! Just let me go to do this... please. Why am I here sitting in my bed when such a wonderful event is going to take place and we are not there!?

She would have been so darling telling her story and singing her song, I am like a star shinning brightly. She shines so bright! Why can't I just hold my girl and listen to her sing the song and demonstrate what wonderful thing organ donation is? I just feel like this is a lifetime platform of mine, and my little girl who would be the best spokesperson ever is not here. Someone tell me why!? please. She had so much to do here... I had so many big plans for her. Now, once again... here I sit in my bed.

We did present to the nursing program at Westminster back in March. After seeing Mia run around and and ham it up like she did, a few of the students came up to us afterwards and said, "I get it!" So many people don't think about it before they are forced to think about it seeing her so happy and healthy and flirty with everyone they understand how beneficial it is. They now see what could have never been.

It just hurts. All of it. All of this!

I have something planned for the day so hopefully I will be distracted by the fact that I am not on a plane with my girlie.

She would have been so sweet and precious! Truly. I just feel like I can't be trusted in public, and I didn't want to get up there and cry for a solid 20 minutes so they found someone else to do it. It makes me sad that I am not there... so sad... too sad. The message was one of such happiness and hope.

Now look at me! BLAH! Is this seriously the plan for me? To constantly feel disappointed in my life? Disappointed because I will forever fall short of this idea I had of myself... of my life that will never transpire now? I can never feel whole again?... how can I? How can I proceed feeling the way I do with all of my past hopes and dreams for myself?

Well, I am off to hopefully be sufficiently distracted that I can make it through part of my day without feeling helpless and picked on.